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Saturday, December 17, 2016

Henrietta Lacks, as HeLa, is known to
present-day scientists for her cells from cervical cancer. She was a poor
Southern tobacco farmer who worked the same land as her slave ancestors, yet
her cells were taken without her knowledge and still live decades after her
death. Cells descended from her may weigh more than 50M metric tons.

HeLa cells were vital for developing the polio vaccine; uncovered secrets of
cancer, viruses, and the atom bomb’s effects; helped lead to important advances
like in vitro fertilization, cloning, and gene mapping; and have been bought
and sold by the billions. Yet Henrietta Lacks was buried in an unmarked grave.

The dark history of experimentation on African
Americans helped lead to the birth of bioethics, and legal battles over whether
we control the stuff we are made of.

* * *

As
the name implies, the Not Your Ordinary Book Group was always intended to break
away from what is expected of traditional reading groups. Keeping this in mind,
we have always tried to offer a wide variety of genres to the group, which has
led to a very diverse list of titles chosen for discussion. I tend to read fiction
myself, but I kept seeing this particular title on lists of recommended reading
and it looked interesting, so I thought the group might want to try something
really different. I am so glad that I suggested it.

I
trained as a biologist in the late 1980s in the UK and yet I have no memory of
being taught about Henrietta Lacks. Admittedly, I did not take any courses that
depended upon the use of human cells, but it still seems that I should have
been aware of her massive contribution to medical research. Of course, that
contribution was not one that she made herself, nor was she even aware that
some of her cancerous cells had been passed along to be grown in a lab, but it
seems to me that her name should be as famous as those of Fleming, Pasteur and
Jenner for her influence upon humanity’s collective health. Her cells
revolutionized our ability to study human diseases and conditions, leading to
countless vaccines and treatments that have saved, prolonged and improved
lives. Yet, she died in the most horrible pain and her family has continued to
live in the poverty that marred her own short life.

This
book gives us a brief history of Henrietta herself, although there is little
detail and very few historical records for the author to draw upon. The medical
accounts of her illness and subsequent death are terse and clinical, as one
would expect, especially given her status as a poor and ill-educated black
woman in the 1950s. Other details are dependent upon the memories of her
surviving relatives and share the horror of a person consumed by cancerous
cells that have proven to be almost immortal in the laboratory. Her autopsy
proved that the cancer that began in her cervix had spread to most of her body
in a short period of time, so it is hardly surprising that later research
showed that HeLa cells could grow rapidly, filling their containers and even
contaminating samples of other human cells being grown in the same labs. Their
ability to grow and reproduce endlessly makes HeLa cells the perfect research
tool because experiments can be repeated endlessly on exactly the same cells,
and they have become invaluable to the scientific community.

It
is very difficult to read the brief descriptions of the agony that
characterized the last few days of Henrietta’s brief life. However, the most
shocking aspects of the book are those dealing with the appalling living
conditions of Henrietta and her family, even her children and grandchildren.
Squalor and poverty, coupled with poor education and a segregated health care
system made Henrietta’s early death seem almost inevitable, but I was inexpressibly
depressed to see that 50 years had not shown a marked improvement in the
family’s social conditions. The pattern of poverty, drug abuse, criminality and
the non-treatment of both physical and mental illnesses was repeated through
the generations although I was very heartened to learn that one of Henrietta’s
great-grandchildren was about to go to college when the book was published.

It
is very easy to blame the research community, and John Hopkins in particular,
for their cavalier attitude towards using Henrietta’s cells without permission and
then profiting from their application. However, samples were being taken from
many sources in an attempt to find a source of human cells that could be used
for research outside the body. This means that many, many samples were tried
and died before Henrietta’s miraculously survived. The man whose lab was
successful in cultivating the HeLa cells did so for no profit whatsoever, and
sent samples of them around the world free of charge, unlike other less
scrupulous practitioners who did indeed profit from cells obtained with little,
or no, informed consent. I can also understand why John Hopkins did not want to
admit any financial responsibility towards the Lacks estate because it could
have set a precedent for claims by other patients. However, it did seem that
somebody, somewhere should have felt morally responsible for making some
recompense to the Lacks family and I was rather disappointed that nobody had
stepped forward to do this.

On
the whole, the actions of the scientific and medical communities were poor in
many respects with regards to Henrietta and her family, but the author provides
many examples of other cases showing a similar disregard for patients. As is
often the case with early work in a new field of research, ethical issues only
became apparent after a certain amount of damage was done. Whilst most parties
were acting in good faith, their ignorance of potential consequences led them
to behave in ways that seem scandalously unethical when viewed from our perspective.

As
our first foray into Non-Fiction, this title was a great success and received a
unanimously high rating from the whole group. We were perhaps most impressed by
how the author’s tenacity in pursuing this story of many years as her
relationship with the Lacks family waxed and waned. Her efforts have produced a
massively informative book that is still easy to read and understand. She
refrains from being too judgmental about the researchers directly involved with
the first production of the HeLa cells and so maintains an impartial air
throughout. She is obviously outraged and moved by the struggles of Henrietta’s
descendants, but does not allow that feeling to bleed through into her writing.

Now that everyone in the group has become an
ardent fan of snails, thanks to Elisabeth Tova Bailey’s exquisite memoir, I
wanted to offer some non-snail alternatives for the 6 weeks before our next meeting.
The titles chosen are Archetype by M.D. Waters and Seraphina by Rachel Hartman.
I have added them to the Nooks.

Our next meeting will be on January 22 in the
Camden National Bank meeting room, which is in the business center. In the
meantime, please try to stay warm!

Archetype
by M.D. Waters

In a future
where women are a rare commodity, Emma fights for freedom but is held captive
by the love of two men—one her husband, the other her worst enemy. If only she
could remember which is which . . .

In the stunning first volume of a two-book
series, Emma wakes with her memory wiped clean. Her husband, Declan—a powerful
and seductive man—narrates the story of her past, but Emma’s dreams contradict
him. They show her war, a camp where girls are trained to be wives, and love
for another man. Something inside warns her not to speak of these things, but
the line between her dreams and reality is about to shatter forever.

Seraphina
by Rachel Hartman

Four decades of peace have done little to ease the mistrust
between humans and dragons in the kingdom of Goredd. Folding themselves into
human shape, dragons attend court as ambassadors, and lend their rational,
mathematical minds to universities as scholars and teachers, however, tensions
are high.

Seraphina Dombegh has reason to fear both sides. An unusually gifted musician,
she joins the court just as a member of the royal family is murdered—in
suspiciously draconian fashion. Seraphina is drawn into the investigation,
partnering with the captain of the Queen's Guard, the dangerously perceptive
Prince Lucian Kiggs. While they begin to uncover hints of a sinister plot to
destroy the peace, Seraphina struggles to protect her own secret, the secret
behind her musical gift, one so terrible that its discovery could mean her very
life.